IPRD’ s rapid growth, potential long-term impact, exemplify‘ bench to bedside’ goal of biomedical research
By Bob Thomas FSU College of Medicine
2025 ANNUAL REPORT / FLORIDA INSTITUTE FOR PEDIATRIC RARE DISEASES 35
Big. Bold. Courageous.
Those were the words Pradeep Bhide, Ph. D., used in June 2024 to describe the goals for what is now known as the Florida Institute for Pediatric Rare Diseases at Florida State University.
Formally launched during FSU Day at the Florida Capitol on Feb. 1, 2024, IPRD began taking shape a year earlier when Rep. Adam Anderson( R-Palm Harbor) brought his vision, driven by personal tragedy, to the Florida Legislature. In July 2023, Gov. Ron DeSantis turned the vision to reality with his signature on the state budget appropriation of $ 1 million for the establishment of the FSU Institute for Pediatric Rare Diseases.
Its mission? To transform the lives of children affected by rare diseases through research, education, diagnosis and clinical care. turned to his alma mater, Florida State University, for assistance and received enthusiastic support from FSU President Richard McCullough when they initially met in 2023.
“ In many ways, [ Adam ] is the engine driving this,” Bhide said. As IPRD’ s executive director, Bhide developed a five-year plan for the institute, broad in scope and ever-evolving, lending itself to interdisciplinary contributions throughout the university and beyond.
“ Deliberately, I have, with everybody’ s cooperation, advice, and guidance, designed IPRD to be a comprehensive program,” said Bhide, who is also FSU College of Medicine’ s Jim and Betty Ann Rodgers Eminent Scholar Chair of Developmental Neuroscience.“ For any health care or health-related topic,
Children like Andrew Anderson, the son of Adam and Brianne, who was diagnosed with Tay-Sachs disease in 2016 and died in 2019. A rare and fatal genetic disorder causing nerve damage to a child’ s brain and spinal cord, Tay-Sachs is one of approximately 7,000 known rare diseases. Approximately 350 million people worldwide live with a rare disease, including 30 million in the United States. Roughly half of all rare diseases begin in childhood.
It became the Anderson’ s mission to ensure other families don’ t have to endure the same pain. Adam
Left photo: Cynthia Vied, Ph. D., who leads IPRD’ s Diagnostic Lab, examines DNA samples before they are sequenced in the lab’ s Illumnia NovaSeq X.
Photo: Florida Rep. Adam Anderson meets with media members following the Sunshine Genetics Act press conference at the College of Medicine.
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